No Idebenone Online Anymore - PPMD Community2020-06-07T10:01:50Zhttp://community.parentprojectmd.org/forum/topics/no-idebenone-online-anymore?commentId=1187424%3AComment%3A192035&x=1&feed=yes&xn_auth=nohi,
I had very bad experience…tag:community.parentprojectmd.org,2013-12-05:1187424:Comment:1920352013-12-05T18:56:03.179ZTanja Petrovichttp://community.parentprojectmd.org/profile/TanjaPetrovic
<p>hi,</p>
<p>I had very bad experience with iHerb site ordering Idebenone. They charged my credit card and than put order on hold asking for some additional charge of 1 or 2 dollars.</p>
<p>How is difficult to pay 1 or 2 dollars without buying something they canceled the order, byt the amount on my credut card was not withdrawn....</p>
<p>so take care and call Kirkma first</p>
<p></p>
<p>sorry for complaining but I have to share my experience with you</p>
<p></p>
<p>hi,</p>
<p>I had very bad experience with iHerb site ordering Idebenone. They charged my credit card and than put order on hold asking for some additional charge of 1 or 2 dollars.</p>
<p>How is difficult to pay 1 or 2 dollars without buying something they canceled the order, byt the amount on my credut card was not withdrawn....</p>
<p>so take care and call Kirkma first</p>
<p></p>
<p>sorry for complaining but I have to share my experience with you</p>
<p></p> Denise, we mix the powder in…tag:community.parentprojectmd.org,2013-01-24:1187424:Comment:1652992013-01-24T20:02:56.903ZDavid Khttp://community.parentprojectmd.org/profile/DavidK
<p>Denise, we mix the powder in a morning "coctail", so for us it's much better to use the powder.</p>
<p></p>
<p>I would recommend that you start him on a lower dose and work your way up to the recommended dose. We found that taking the coctail at the end of breakfast works well, as our son (6 now) had some stomach pains in the beginning. Giving him fish oil at the same time is supposed to help the uptake in the body as well.</p>
<p></p>
<p>I ordered idebenone from two different places just to…</p>
<p>Denise, we mix the powder in a morning "coctail", so for us it's much better to use the powder.</p>
<p></p>
<p>I would recommend that you start him on a lower dose and work your way up to the recommended dose. We found that taking the coctail at the end of breakfast works well, as our son (6 now) had some stomach pains in the beginning. Giving him fish oil at the same time is supposed to help the uptake in the body as well.</p>
<p></p>
<p>I ordered idebenone from two different places just to be sure to get it, so now I have too much. Gonna start taking it myself...</p> I think you can only get it n…tag:community.parentprojectmd.org,2013-01-24:1187424:Comment:1651462013-01-24T18:41:00.328ZDonna Cicardohttp://community.parentprojectmd.org/profile/DonnaCicardo
<p>I think you can only get it now in bulk powder form. You can measure it out and get some vegi-caps and fill those. </p>
<p>I think you can only get it now in bulk powder form. You can measure it out and get some vegi-caps and fill those. </p> Kirkman does sell the 150mg c…tag:community.parentprojectmd.org,2013-01-24:1187424:Comment:1652892013-01-24T14:11:26.697ZJoshua's momhttp://community.parentprojectmd.org/profile/Joshuasmom
<p>Kirkman does sell the 150mg capsules. Joshua was taking 500mg when he was 7. It is completely up to you as to how you do it. We, and most others, have not seen any negative side effects so if you were to start him on 500mg, you may see the positive side effects much quicker. The first signs Joshua had were the hard calves turning soft and the physiotherapist noticed his range of motion had increased.</p>
<p>Kirkman does sell the 150mg capsules. Joshua was taking 500mg when he was 7. It is completely up to you as to how you do it. We, and most others, have not seen any negative side effects so if you were to start him on 500mg, you may see the positive side effects much quicker. The first signs Joshua had were the hard calves turning soft and the physiotherapist noticed his range of motion had increased.</p> Evan is 7 years old/8 next mo…tag:community.parentprojectmd.org,2013-01-24:1187424:Comment:1651942013-01-24T11:58:53.131ZDenise Bretsikhttp://community.parentprojectmd.org/profile/DeniseBretsik
<p>Evan is 7 years old/8 next month and about 58 lbs. Do you think starting him at 500 mg is ok or do you think we should start him off lower and work our way up? Does Kirkman sell the capsules?</p>
<p></p>
<p>Thanks for all your help. I really appreciate it!!!</p>
<p>Evan is 7 years old/8 next month and about 58 lbs. Do you think starting him at 500 mg is ok or do you think we should start him off lower and work our way up? Does Kirkman sell the capsules?</p>
<p></p>
<p>Thanks for all your help. I really appreciate it!!!</p> Joshua is 9 years old and wei…tag:community.parentprojectmd.org,2013-01-24:1187424:Comment:1651892013-01-24T04:10:00.742ZJoshua's momhttp://community.parentprojectmd.org/profile/Joshuasmom
<p>Joshua is 9 years old and weighs 67 lbs. We were told he can go up to 950 mg. He is on 500 mg and we will wean him up to the 950 mg as he needs it. You can order from <a href="http://www.kirkmanlabs.com/SiteSearchResult.aspx?strSiteSearch=idebenone">:: Kirkman ::</a> but you have to call them directly to order it. Otherwise the powder and capsules may be your best bet if you want to increase it over time. Doing it that way is also a lot cheaper but time consuming when it comes to…</p>
<p>Joshua is 9 years old and weighs 67 lbs. We were told he can go up to 950 mg. He is on 500 mg and we will wean him up to the 950 mg as he needs it. You can order from <a href="http://www.kirkmanlabs.com/SiteSearchResult.aspx?strSiteSearch=idebenone">:: Kirkman ::</a> but you have to call them directly to order it. Otherwise the powder and capsules may be your best bet if you want to increase it over time. Doing it that way is also a lot cheaper but time consuming when it comes to filling the capsules. It's worth the time though. If you have any specific questions, feel free to ask! </p>
<p></p>
<p>Naomi</p> Hello,
We have decided to sta…tag:community.parentprojectmd.org,2013-01-24:1187424:Comment:1651382013-01-24T01:50:36.556ZDenise Bretsikhttp://community.parentprojectmd.org/profile/DeniseBretsik
<p>Hello,</p>
<p>We have decided to start Evan on idebenone and received the rx. He is starting him on 500mg a day. I was a little suprised to see this amount. I thought it would be lower and then increase over time. We have not started him on it yet. Could you give me your input? Also I believe that I have to get the powder and empty capsules...am I correct? Any advise on stating this would be helpful</p>
<p> </p>
<p>Thank you</p>
<p>Hello,</p>
<p>We have decided to start Evan on idebenone and received the rx. He is starting him on 500mg a day. I was a little suprised to see this amount. I thought it would be lower and then increase over time. We have not started him on it yet. Could you give me your input? Also I believe that I have to get the powder and empty capsules...am I correct? Any advise on stating this would be helpful</p>
<p> </p>
<p>Thank you</p> We use Smart Powders. They st…tag:community.parentprojectmd.org,2012-12-21:1187424:Comment:1637832012-12-21T22:22:01.905ZDavid Khttp://community.parentprojectmd.org/profile/DavidK
<p>We use Smart Powders. They stopped selling Idebenone in capsules, they started selling it in bulk instead after not selling it at all for a while. All you need is the powder and a digital scale to get the exact weight.</p>
<p></p>
<p>/David<br></br> <br></br> <cite>Dalibor Randjelovic said:…</cite></p>
<blockquote cite="http://community.parentprojectmd.org/forum/topics/no-idebenone-online-anymore?commentId=1187424%3AComment%3A163645&amp;xg_source=msg_com_forum#1187424Comment163780"></blockquote>
<p>We use Smart Powders. They stopped selling Idebenone in capsules, they started selling it in bulk instead after not selling it at all for a while. All you need is the powder and a digital scale to get the exact weight.</p>
<p></p>
<p>/David<br/> <br/> <cite>Dalibor Randjelovic said:</cite></p>
<blockquote cite="http://community.parentprojectmd.org/forum/topics/no-idebenone-online-anymore?commentId=1187424%3AComment%3A163645&amp;xg_source=msg_com_forum#1187424Comment163780"><div><div class="xg_user_generated"><p><br/>Hi,<br/>We just started with idebenone which we order before four months from kirkman. Our son is just turned 2 years and last three months we gave him qoenzime q10 (50mg daily) and now we switched on idebenone ( 45mg daily). But Now I see there is no idebenone on line from kirkman so I would ask all of you which supplier you suggestion to continue with idebenone ?<br/>Thanks in advance,</p>
<p>Marija</p>
</div>
</div>
</blockquote> Kirkman still carries it, but…tag:community.parentprojectmd.org,2012-12-21:1187424:Comment:1636452012-12-21T19:16:28.275ZKeith & Jill VEhttp://community.parentprojectmd.org/profile/KeithVanEck
<p>Kirkman still carries it, but not online. I called them a few weeks ago and ordered a large supply... :)</p>
<p></p>
<p>Keith<br></br> <br></br> <cite>Dalibor Randjelovic said:</cite></p>
<blockquote cite="http://community.parentprojectmd.org/forum/topics/no-idebenone-online-anymore?commentId=1187424%3AComment%3A163780&amp;xg_source=msg_com_forum#1187424Comment163780"><div><div class="xg_user_generated"><p><br></br>Hi,<br></br>We just started with idebenone which we order before four months from kirkman.…</p>
</div>
</div>
</blockquote>
<p>Kirkman still carries it, but not online. I called them a few weeks ago and ordered a large supply... :)</p>
<p></p>
<p>Keith<br/> <br/> <cite>Dalibor Randjelovic said:</cite></p>
<blockquote cite="http://community.parentprojectmd.org/forum/topics/no-idebenone-online-anymore?commentId=1187424%3AComment%3A163780&amp;xg_source=msg_com_forum#1187424Comment163780"><div><div class="xg_user_generated"><p><br/>Hi,<br/>We just started with idebenone which we order before four months from kirkman. Our son is just turned 2 years and last three months we gave him qoenzime q10 (50mg daily) and now we switched on idebenone ( 45mg daily). But Now I see there is no idebenone on line from kirkman so I would ask all of you which supplier you suggestion to continue with idebenone ?<br/>Thanks in advance,</p>
<p>Marija</p>
</div>
</div>
</blockquote> Hi,We just started with idebe…tag:community.parentprojectmd.org,2012-12-21:1187424:Comment:1637802012-12-21T19:09:25.341ZDalibor Randjelovichttp://community.parentprojectmd.org/profile/DaliborRandjelovic
<p><br/>Hi,<br/>We just started with idebenone which we order before four months from kirkman. Our son is just turned 2 years and last three months we gave him qoenzime q10 (50mg daily) and now we switched on idebenone ( 45mg daily). But Now I see there is no idebenone on line from kirkman so I would ask all of you which supplier you suggestion to continue with idebenone ?<br/>Thanks in advance,</p>
<p>Marija</p>
<p><br/>Hi,<br/>We just started with idebenone which we order before four months from kirkman. Our son is just turned 2 years and last three months we gave him qoenzime q10 (50mg daily) and now we switched on idebenone ( 45mg daily). But Now I see there is no idebenone on line from kirkman so I would ask all of you which supplier you suggestion to continue with idebenone ?<br/>Thanks in advance,</p>
<p>Marija</p>